Great contribution Buzznerd. I see you joined almost a year ago and this is your first post. Obviously you have done some "research" and find this important enough to share - it is not recycled news. Thank you! Interested in your other thoughts too. The association again with sodium channels comes up again.

Matthew 6:27 Who of you by worrying can add a single hour to his life?

I just got back from Duke University and was told I likely have small fiber neuropathy. They said I could have biopsy but it really wouldn't change anything by knowing for sure so I refused. It's a long drive for me. He did say it can get better with time. Gabapentin, diet and exercise is the treatment of choice for "mild" small fiber neuropathy. They have immune suppression drugs also but not recommended for my "mild" case.

Thanks so much for posting this. One of my neurologists mentioned this about two years ago, and she said that would explain why my EMGs were normal: because as you said it doesn't show up well on the EMG's. She also told me that the biopsy was maybe not worth the time/$ because what would it accomplish, she already knew that whatever I have is benign. For those on this forum wanting a definitive answer as to WHY, etc...this is a great bit of info.

Neuropathic pain is my main concern about my condition. I feel after 8 years the pain at onset was 0/10 and today it would be 8/10.

I have had chronic denervation since my first emg over 6 years ago and i know what i have going off has been slowly progressive in all aspects ie cramping fascics and pain. My next neuro appointment on the 19th of this month i am asking for a sural / muscle biopsy and my VGKC abs doing again after learning that some assays are not accurate

Anti-VGKC antibodies are biomarkersfor acquired neuromyotonia, butprevalence is highly dependent on the assaysused. With radioimmunoassays, <65%of neuromyotonia patients have VGKC antibodies.By comparison, IIF is much moresensitive, detecting up to 100%.

Both lower legs from the knee downwards,,,most of my pain is at outside (lateral aspect) both legg also the area below my calf near the Achilles tendon and both feet. i'm also struggling to stand on my tip toes or just toe walk because of a constant severe cramp but heel walking is fine.